The younger face of Alzheimer's

Those who see symptoms before retirement struggle with work and family

Karen Zimmerman, 53, a sufferer of early onset Alzheimer's disease, speaks Sunday evening with her husband Keith Holdsworth at a candlelight rally for Alzheimer's disease in Rockville.

Karen Zimmerman accounted for her problems at work with stress. Working as a meeting planner for a large hotel in a major national chain, she oversaw organizing the hotel's numerous conventions .

She was becoming forgetful and having trouble concentrating. Her social life suffered too — she would call her friend to schedule a movie or a night out, and then forget to show up. She concluded that she was most likely menopausal, and doctors pawned it off as anxiety.

Alzheimer's disease, she said, was never on her radar screen.

"I knew I was having trouble with my memory, but I thought a pill would make it better," Zimmerman, a Northern Virginia resident, told a crowd gathered for a Sunday night candlelight rally for Alzheimer's disease organized by the Alzheimer's Association's national capital area chapter. "I thought [Alzheimer's] was a disease that affects grandmothers and grandfathers, not men and women in their prime."

At 51, Zimmerman was diagnosed with early-onset Alzheimer's — the form of the debilitating disease characterized by memory loss and confusion that is diagnosed in people under the age of 65. Alzheimer's disease is an irreversible, progressive brain disease that impairs memory and thinking skills and eventually hampers the ability to complete even simple tasks, according to the National Institute on Aging.

Zimmerman isn't the face that many associate with Alzheimer's disease, doctors and advocates say. About one-tenth of the cases of Alzheimer's disease diagnosed in the United States are among people under the age of 65 — about 400,000 people, according to the Alzheimer's Association. New diagnoses for early onset appear to be on the rise, though some say it may be due to increased awareness.

For Zimmerman, the diagnosis meant a drastic change in her workaholic lifestyle. "I was given disability paperwork to fill out, with a return to work date as never,'" Zimmerman said Sunday. "That, my friends, is a life-altering experience."

While an Alzheimer's diagnosis is devastating at any age, it's even more of a challenge for people who may be still working and raising families, according to Terry Ullman, a Bethesda-based clinical social worker.

In younger sufferers, the symptoms may be misdiagnosed at first. As the disease progresses, friends and family members are often impacted as well.

"It never just affects the one person, because there is always at least one caregiver," said Jane Priest, chief program officer of the Alzheimer's Association's national capital area chapter.

Zimmerman has re-directed the time and energy she once spent at work toward advocating with the Alzheimer's Association. She encourages people who may be concerned about memory loss to get a diagnosis as early as they can. "I want people to understand that this is not normal aging," she said. "I want to be an example."